How I Deal With the Unpredictability of Fibromyalgia

Today my skin is burning all over my body and in some patches, it feels like my skin might even rip open. The burning crawls up my arms and legs. But today is not the worst. I have no itching or burning in my mouth, ears and eyelids. Today is a relatively good day.

I haven’t done anything differently. Like most days, I got up and showered, caught the bus to work, sat at my desk doing my job and so it goes. I’m thankful I feel lucid and didn’t confuse my words in a meeting.

I imagine others, as I do, constantly checking their symptoms online to see if what they’re feeling on a particular day is fibromyalgia-related. For me, mostly it is. It’s pretty incredible just how many symptoms are associated with this confusing and challenging illness.

Yes I know I’m not alone in my struggles and I’m keen to hear from others about what they do to ease their flare-ups, their bad days. Sometimes the pain is all-consuming. It tests my resilience. It frightens me. It makes me wonder what the future holds.

I worry about sleeping too much, or not enough. I worry about my concentration. I worry I’m irritable. But this is my now and my future, so what do I do to cope with this illness and its unpredictability?

Here’s my personal top five:

1. Accept I have an illness.

2. Don’t be too hard on myself if I can’t do everything I planned to do any given day.

3. Listen to my body. If it hurts, don’t push myself where I can make things worse.

4. Remove myself from stressful situations.

5. Monitor my pain in a journal, to be able to report back to my doctors.

I know this may all seem simple and obvious, but it’s how I’m coping.

It’s also extremely important for me to share how I’m feeling with friends and family, so if I’m not having one of my good days, they will understand even if I cancel on them at the last minute.

Let’s hope now there are more good than bad!

Find this story helpful? Share it with someone you care about.

Related to Fibromyalgia

portrait of a woman standing outside looking serious

I'm Tired of Other People Thinking They're the Expert on My Body

There are too many doctors in my family. Thankfully, I’m usually on the other side of the world so I don’t have to listen to their medical opinions on me all the time. However, when I live with them, is it ever soul crushing. I usually find trips to a doctor traumatic. But living with [...]
Two thought bubbles, one with a green check mar and the other with a red "x."

When Your Illness Makes Others See You as 'Flaky'

I’m sure I’m not the only one that has a number of relationships – be it with lecturers, current or past bosses, cast members, best friends, friends, boyfriends, girlfriends, husbands, wives, friends with benefits, etc., who sigh and groan if you dare to message or call them now. In-person (if you still meet at all) [...]
neurodermatitis rash and scarring on a woman's arm, and a woman with flushed red cheeks

16 Photos That Show How Fibromyalgia Can Affect Your Skin

Fibromyalgia is commonly associated with symptoms such as widespread pain and fatigue, but there are a number of lesser-known symptoms that don’t get brought to light as often. Many fibro warriors experience skin issues such as rashes, redness or easy bruising, though they may not always realize these symptoms are related to fibromyalgia until they [...]
A woman holding an umbrella over her head in stormy weather, while standing in the middle of a body of water that goes above her waste.

Why I'm Confronting the Feelings and Thoughts My Pain Brings

More than 10 years ago I felt the strong urge to change my life. I was 15, quite unsatisfied and felt deeply that I wasn’t living my life in line with my principles and values. I remember walking home from school when the puzzle got solved and my thoughts turned around 180 degrees. Suddenly I [...]